Table of Contents
Table of Contents ..................................................................................................................................... i
1. The Development of Irish Disability Services...................................................................................... 1
2. The Profile of Intellectual Disability in Ireland ..................................................................................... 4
3. The Configuration and Funding of Disability Services ........................................................................ 7
4. Recent Developments in National Disability Policy .......................................................................... 10
Strategy for Equality: Report of the Commission on the Status of People with Disabilities ............. 11
National Disability Strategy & Towards 2016: Ten Year Framework Social Partnership Agreement
2006-2015 ......................................................................................................................................... 11
A Vision for Change: Report of the Expert Group on Mental Health Policy...................................... 13
Report of the National Reference Group on Multidisciplinary Disability Services for Children Aged 518 Years ............................................................................................................................................ 13
The National Housing Strategy for People with a Disability 2011-2016 ........................................... 14
Time to Move on from Congregated Settings: A Strategy for Community Inclusion ........................ 16
New Directions: Review of HSE Day Services and Implementation Plan 2012-2016 ...................... 19
Value for Money and Policy Review of Disability Services ............................................................... 21
5. From Policy to Practice ..................................................................................................................... 28
6. The Challenge of Implementation ..................................................................................................... 31
This report was undertaken as part of the Moving Ahead project, a research study that aimed to
examine the role of factors that contribute to the successful transfer of residents with intellectual
disabilities from congregated to community-based living arrangements in two regional areas in
Ireland. The study was undertaken by a team of researchers from Ireland and the UK, led by Trinity
College Dublin. The research was awarded funding from the Health Research Board’s Health
Research Awards 2012-2014.
Copyright: This report should be cited as Linehan, C., O’Doherty, S., Tatlow-Golden, M., Craig, S.,
Kerr, M., Lynch, C., McConkey, R., & Staines, A. (2014). Mapping the National Disability Policy
Landscape. Dublin: School of Social Work and Social Policy, Trinity College Dublin.
Further details of the study can be found at http://socialwork-socialpolicy.tcd.ie/moving-ahead/ or by
contacting Dr Christine Linehan, Principal Investigator at the School of Social Work and Social Policy,
Trinity College Dublin and School of Psychology, University College Dublin.
The authors would like to acknowledge the valuable assistance of our advisory group Petra
Bangemann, Dr Colin Griffiths, Denise O’Leary, Bill Roberts and Eamon Tierney.
© (2014) Moving Ahead.
i|Page
1. The Development of Irish Disability Services
1.1
The historical development of services for people with disabilities in Ireland can be traced to an
th
edict by the Westminster Parliament in the early 19 century not to provide ‘outdoor relief’ to
those in need. Assistance would be provided only to those who entered workhouses, thereby
excluding those who remained in the family home. The quantum of workhouses expanded to
th
meet demand and by the mid 19 century over 150 workhouses existed throughout Ireland.
1.2
Men, women, and children who had fallen on misfortune were housed in separate areas of
workhouses, distinct from ‘lunatic cells’ which were generally relegated to the rear of the
workhouse. The Dickensian conditions in these workhouses, combined with the development
of disability specific facilities internationally, were instrumental in the establishment in 1896 of
Ireland’s first specialised institution for people with disabilities, the Stewart Institution for Idiotic
1
and Imbecile Children .
1.3
After political autonomy in 1922, the Irish state assumed responsibility for providing supports for
those in need: for example, those with intellectual disabilities, epilepsy, or mental health
difficulties, as well as unmarried mothers and their children. The fledgling state, however, had
few resources. In addition, it had a strong Catholic identity and an enmeshed relationship with
the Catholic Church. The Irish Constitution (1937) recognised the special position of the
Catholic Church as the church of the majority of the population. Governments of the new state
were almost exclusively Catholic and were influenced by individual members of the Church
2
Hierarchy as well as by Catholic social teaching . Ruth Barrington’s seminal review of the role
of the Church in Irish health policy noted that Catholic moral precepts were applied quite
simplistically to health and social needs, Catholic social teaching promulgated the principle of
‘subsidiarity’, drawn from the papal encyclical, Quadragesimo Anno, 1931, which held that the
state should refrain from involvement in local activities as long as groups in the community
were reasonably effective. These precepts also coincided with Irish preference for a minimalist
3
role for the state in matters affecting the individual and the family . Thus the Church came to
th
dominate health and social care service provision in 20 century Ireland, including provision for
4
those with intellectual disability.
1.4
In this context, the Irish state adopted a hands-off approach, delegating many aspects of
5
health, social care and education, to religious orders . Department of Health memoranda in the
1950s record the government’s explicit preference for religious orders to deliver intellectual
disability services, resolving to ask heads of religious orders personally to expand services and,
6
if necessary, to ‘induce’ further orders to enter the field . This attitude to service development
should be viewed in light of a number of factors in addition to the lack of the state’s financial
resources. Religious orders were held in ‘reverence’ in the overwhelmingly Catholic country,
1
McCormack, B. (2004). Trends in the development of Irish disability services. In P.N. Walsh and H. Gash (Eds) Lives and
Times: Practice, policy and people with disabilities. Wicklow, Rathdown Press.
2
Barrington R. 1987. Health, medicine and politics in Ireland 1900–1970. Dublin: Institute of Public Administration.
3
ibid
4
Sweeney J. (2010). Attitudes of Catholic religious orders towards children and adults with an intellectual disability in
post-colonial Ireland. Nursing Inquiry, 17 (2) 95-110.
5
Ibid
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision of
Disability Services by Non-Profit Organisations. Dublin; Government of Ireland.
6
Ryan, A., 1999. Walls of Silence: Ireland’s Policy Towards People with a Mental Disability. Red Lion Press,
Kilkenny.p.46.
1|Page
7
the lives of orders’ sainted founders were ‘part of the common consciousness of the nation’ . In
addition, in a social climate where intellectual disability was often stigmatised, religious orders
8
were entrusted with providing services that could be relied upon to be confidential .
th
1.5
The Irish state practiced little oversight of health, education and social services in the mid-20
century. Although the government financed intellectual disability services through capital and
land grants, it had little control over them; terms and conditions for services provided, if they
9
existed, were not made public . Accountability for quality of care for people with intellectual
disabilities was governed by the rule of the religious orders, and by their responsibility to their
10
head and the local bishop . Provision for people with intellectual disabilities thus developed
11
into a ‘hit or miss’ service . In 1957, the Assistant Inspector of Mental Hospitals noted there
was ‘no way of achieving co-ordination or organisation’ in accommodation for people with
12
intellectual disabilities . Since that time, concerns regarding a lack of co-ordination,
organisation and oversight of voluntary services in Ireland have been a consistent theme, and
this report returns to this issue in Section 6.
1.6
Among many religious orders establishing specialised facilities in the early years of the Irish
state were the Daughters of Charity (1922), the Sisters of Charity of St. Vincent de Paul (1926),
the St. John of God Order (1931) and the Brothers of Charity (1939). Specialist residential
schools expanded rapidly during the 1930s and both children and adults with intellectual
disabilities, who had previously received generic supports, were transferred in large numbers to
receive more specialist care in these facilities
1.7
By the 1950s the pace of expansion of intellectual disability specific services outstripped
available religious staff. Others, typically nurses, were employed to supplement the workforce
13
and a nursing specialisation in intellectual disability was established . Concurrently,
professional specialisation in intellectual disability was introduced in several disciplines
including psychology, education, occupational therapy and speech therapy.
1.8
In addition to the extensive involvement of religious orders in intellectual disability services,
another strand of voluntary services developed, ‘parents and friends associations’. These lay
organisations met the needs of families who did not wish to avail of existing institutional care.
They grew rapidly in the 1960s, creating considerable local interest and awareness in disability
matters. This increase in disability services, combined with rising expenditure for residential
accommodation, was a significant factor in the production of a Government White Paper, The
14
Problem of the Mentally Handicapped (Department of Health, 1960) . The paper noted that in
order to adequately meet the demands of ever increasing numbers of people with intellectual
disability seeking residential supports in particular, the number of residential places needed to
be doubled from the 3,200 then available, to approximately 7,000 places.
7
Ibid p.120
8
Ibid p.116
9
Sweeney J. (2010). Attitudes of Catholic religious orders towards children and adults with an intellectual disability in
post-colonial Ireland. Nursing Inquiry, 17 (2) 95-110.
10
Ibid
11
Ryan, A., 1999. Walls of Silence: Ireland’s Policy Towards People with a Mental Disability. Red Lion Press, Kilkenny.
p.116.
12
Ibid p.49.
13
Sweeney J. (2010). Attitudes of Catholic religious orders towards children and adults with an intellectual disability in
post-colonial Ireland. Nursing Inquiry, 17 (2) 95-110.
14
Department of Health (1960). Report: The Problem of the Mentally Handicapped. In Commission of Inquiry on Mental
Handicap. Dublin, Government Publications.
2|Page
1.9
The subsequent Commission of Inquiry into Mental Handicap (Department of Health, 1965)
marked a fundamental paradigm shift in disability supports nationwide by acknowledging that
superior quality outcomes were afforded to those availing of community care when compared
with those in institutional settings. The Commission noted that as community services were
not feasible for all individuals, a range of facilities was required. It concluded that, as before,
services should be provided through voluntary bodies, whose development health authorities
should encourage. The Commission also required of the state that it should ‘accept
responsibility for co‐ordinating the activities of the various organisations involved’.
1.10 By the early 1970s, the number of voluntary providers registered with the National Association
of Mental Handicapped of Ireland, an umbrella lay organisation founded in 1961, had increased
to almost 100. By international standards, relatively few residential centres nationwide were
large in scale: only three centres provided for more than 300 residents, and a further 12 centres
15
provided for 100-200 residents . Larger settings were coming under increasing pressure
internationally, most notably in the UK, where a series of scandals highlighted the sub-standard
16
provision of these institutional settings .
17
1.11 The publication of the Green Paper Towards a Full Life (1984) set out Government policy in
the 1980s for people with disabilities. The paper identified that the ‘main thrust in the
development of services has come from voluntary bodies, including religious orders and
parents and friends associations’ which at that time comprised over 140 organisations
nationwide. The report identified over 5,000 individuals with ‘mental handicap’ availing of
places within residential centres and noted that while demand for such centres was unlikely to
decline, residents were more likely to have severe to profound levels of disability, reflecting
growing trends towards community living for those with milder levels of disability.
1.12 In 1990, the Irish state’s first, and only, intellectual disability specific policy paper was
published. Needs and Abilities acknowledged that ‘greater numbers of children and adults for
whom hitherto admission to a residential centre would have been envisaged can, in fact, live to
18
their full potential within the community’ . The report recommended that ‘large numbers of
highly dependent intellectually disabled persons should not be placed in one location. New
residential provision should be in small clusters of 3 to 4 houses at a number of locations’.
1.13 The almost exclusive role of nonprofit organisations in providing intellectual disability services
19
in Ireland has continued from the foundation of the state to the present day ; in 2004 they
20
provided approximately 90% of services . The state, however, provides most of the funding
15
Moloney, H., (1971). Provincial Superior Brothers of Charity, Dublin. Paper read at World Federation of Mental Health
and National Society for Mentally Handicapped Children. Action for the Retarded Conference, Spring, Belfield, Dublin.
16
Department of Health and Social Security. (1969). Report of the Committee of Inquiry into Allegations of Ill-treatment of
Patients and Other Irregularities at the Ely Hospital, Cardiff (Cmnd 3975). London: Her Majesty’s Stationery Office.
Morris, P. (1969). Put Away. London: Routledge and Kegan Paul
17
Department of Health (1984). Towards a Full Life: Green paper on services for Disabled People. Dublin, Government
Publications.
18
Government of Ireland (1990). Needs and Abilities: Report of the Review Group on Mental Handicap Services (1990).
Dublin, Government Publications.
19
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health.
20
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision
of Disability Services by Non-Profit Organisations. Dublin; Government of Ireland.
3|Page
for these services; in 2009, non-exchequer funding accounted for just 5-7% of disability
21
services in Ireland .
1.14 Disability policy in Ireland has advanced markedly in recent years since the publication of
Needs and Abilities, culminating in a Value for Money and Policy Review of Disability Services
in Ireland published in 2012. Before outlining recent policy developments, a brief review is
presented profiling the population of people with intellectual disabilities in Ireland, and the
disability-specific services that are available to support their needs.
2. The Profile of Intellectual Disability in Ireland
22
2.1
The National Intellectual Disability Database (NIDD) provides an extensive profile of the
demographics and service use of people with intellectual disabilities across the Irish state who
are registered with, or are identified as being in need of, specialist disability services. In 2012,
the number of individuals with intellectual disability registered on the database was 27,622, a
23
prevalence rate of 6.02 per 1,000 population .
2.2
Prevalence rates from the database vary by severity of disability and by geographical region.
The prevalence for those with a mild level of intellectual disability is currently 1.99 per 1,000,
rising to 2.41 per 1,000 for those with moderate intellectual disability, and declining to 0.89 and
0.21 respectively for those with severe or profound levels of intellectual disability. The
prevalence for those with mild intellectual disability is likely to be an underestimate given that
the database excludes those who are not in receipt of, or in need of, disability specific services.
Consequently, the database over-represents those with higher support needs who have a mild
level of intellectual disability. Geographically, Sligo reports the highest prevalence of
intellectual disability at 10.6 persons per 1,000 population, while Clare and Meath report the
lowest prevalence estimate, both citing a prevalence estimate of 4.7 per 1,000 population.
2.3
The true nationwide prevalence of intellectual disability should not be determined from the
NIDD given its exclusion of those who are not currently using or needing services. Some
indication of the true prevalence rate may, however, be gleaned from the National Disability
Survey which identified 50,400 persons nationwide self-reporting a diagnosis of intellectual
24
disability . Caution is needed, however, in interpreting the variation in these figures. First, the
definition of intellectual disability differs between the NIDD and the National Disability Survey,
with NIDD using the World Health Organisation’s International Classification of Diseases Tenth
Edition (ICD-10), while the National Disability Survey uses the World Health Organisation’s
International Classification of Functioning (ICF). Second, further analysis of those who
reported an intellectual disability on the National Disability Survey revealed that a proportion
reported their main disability to be dyslexia, other forms of specific learning disability, attention
21
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health.
22
The National Intellectual Disability Database is one of two disability databases, the other being the National Physical and
Sensory Database, which are managed by the Health Research Board on behalf of the Department of Health. The databases
aim to provide a comprehensive and accurate information base for decision making in relation to the planning of specialised
health and personal social services for people with intellectual, physical or sensory disabilities. More information can be
found at http://www.hrb.ie/health-information-evidence/disability/
23
Kelly, .F, Kelly, C.,& O’Donohoe, A., (2012). Annual Report of the National Intellectual Disability Database Committee
2012. Dublin, Health Research Board.
24
Central Statistics Office (2008). National Disability Survey 2006. Dublin; Stationary Office. Persons with specific
intellectual and learning difficulties: level of difficulty by type of disability: Table F.6 (p.64)
4|Page
deficit disorder or brain injury. These individuals would not be registered with NIDD unless they
report an ICD-10 diagnosis of intellectual disability. Finally, as stated above, the NIDD
registers only those individuals with an intellectual disability for whom specialised services are
provided or requested. As such, they comprise a smaller group than all those who defined
themselves as having an intellectual disability on the National Disability Survey, irrespective of
whether they avail of services. Another source of prevalence data emanates from the 2011
Census which identified 57,709 individuals self-reporting ‘intellectual disability’ as a long-lasting
25
condition . Again, it is possible that this figure is over-inclusive, including those who may not
have a diagnosed intellectual disability.
2.4
For those persons with a diagnosed intellectual disability who are in contact with disabilityspecific services, comprehensive demographic and service use data are available from the
NIDD. In 2012, a total of 27,622 individuals were registered on the database. There were
more male (58%) than female (42%) persons registered on the database, with the highest
proportion of both male (39%) and female (41%) persons diagnosed as having a moderate
level of disability. Age profiles reveal that over one-third of those on the database are under 19
years of age (37%), with approximately one-quarter in each of the age brackets from 20-34
years and 35-54 years. Just 13% are 55 years or older. Changes in age trends reveal that
increases in registration are largely confined to the two older age groups, a likely reflection of
improved care standards and increased longevity. Just over 40% of those persons registered
on the database were identified as having a co-morbid physical and/or sensory disability.
2.5
The majority of individuals registered on the database (n=18,330; 66%) live at home with their
parents, other relatives or foster families. Those who do avail of full-time residential supports
(n=9,255) are supported in a variety of residential living arrangements, the most common of
which is the community group-home (n=4,226), followed by those in residential centres
(n=2,561) and ‘other’ placements (n=1,311) which include psychiatric hospitals, intensive
placements, nursing homes, and mental health community residences. An additional 1,157
persons live in independent settings.
2.6
A breakdown of those registered on the database by main residential circumstances is
presented in Table 1 below.
25
Central Statistics Office (2012). Our Bill of Health. Dublin, Stationary Office.
5|Page
Table 1: Main residential circumstances of individuals registered on the National Intellectual
Disability Database by degree of intellectual disability 2011
Not verified
Mild
Moderate, severe,
profound
All
2,304
6,806
9,220
18,330
Community group
home
Residential Centre
19
933
3,274
4,226
2
232
2,327
2,561
Other full-time
placement
Independent
13
246
1,052
1,311
52
894
211
1,157
Insufficient
information
No fixed abode
3
5
16
24
0
10
3
13
2,393
9,126
16,103
27,622
Home
Total
2.7
A notable age trend is apparent: the proportion of persons who live in home settings decreases
with age, while the proportion of individuals who live in full-time residential services increases
with age. Given the increased longevity of people with intellectual disabilities, and the ageing
profile of caregivers, it is likely that the demand for residential supports, most especially for
those in older age groups, will increase in the coming years.
2.8
A level of ability trend is also apparent: individuals with greater levels of disability are more
likely to avail of full-time residential supports. Almost half, 41%, of those with a moderate,
severe or profound level of ability live in full-time residential services, in comparison with 16%
of those with a mild intellectual disability. In addition, there is an association between a
person’s level of ability and their type of residential setting. Of those with a moderate, severe
or profound disability who avail of residential services, 49% avail of community group home
accommodation while 37% are supported in residential centres. This contrasts with 66% of
those with a mild level of ability who reside in community group homes while just 17% live in
residential centres.
2.9
Since the establishment of the database in 1996, residential trends reveal a significant increase
(77%) in the number of people supported in full-time community group homes; a significant
decline (78%) in the numbers of people supported in psychiatric hospitals; and a substantial
increase in planned or emergency centre-based respite (457%) which has aimed to support
individuals to continue living with their families in their local communities.
2.10 The database also provides information on the number new full-time residential places required
to meet known demand. This demand has increased slightly from 2,248 places in 2011 to
2,271 places in 2012. Seven out of ten of those requiring a new residential place (1,623 individuals, 72%) have a moderate, severe or profound intellectual disability.
6|Page
3. The Configuration and Funding of Disability Services
3.1
The Health Service Executive (HSE) has primary responsibility for the provision of specialist
disability services to all eligible persons with disabilities in Ireland. Where HSE are unable to
provide these services at regional level, primary responsibility is transferred from HSE to
locally-based voluntary, non-statutory organisations.
3.2
Specialist disability services funded under the Health Vote (40) include, in order of expenditure:
residential services; adult day care services; disability allowances; multidisciplinary teams;
personal assistant services; respite services; rehabilitation; aids & appliances; placements
26 27
requiring revision and early intervention teams , .
3.3
The budget allocation for these specialist disability services in 2013 was €1.535 billion, a
28
reduced allocation of 1.2% . Unlike other international jurisdictions, much of this funding is
allocated to non-health related services, such as housing, day services and respite supports.
In Ireland, three quarters of all disability funding is allocated to the provision of residential and
29
adult day care services; residential services alone accounting for 48% of the entire budget .
Expenditure on residential services for people with intellectual disabilities in 2009 totaled €371
million. The majority of this funding was allocated to those in receipt of seven day residential
services, and was divided equally between larger institutional facilities and community-based
30
settings .
3.4
In total, there are 217 specialist disability service providers nationwide . These provider
organisations may be classified as follows:
3.5
31

Statutory services delivered directly via the HSE (1 organisation providing multiple
services nationwide)

Non-statutory organisations funded under Section 38 of the Health Act 2004 (17
organisations)

Non-statutory organisations funded under Section 39 of the Health Act 2004 (199
organisations, however, it should be noted that the number varies annually)
The non-statutory providers are essentially commissioned by HSE to provide disability specific
services on behalf of the HSE (Section 38) or to provide a similar service, or ancillary to, a
service that the HSE may provide (Section 39). While theoretically the distinguishing factor
between the two types of organisations is whether they provide ‘on behalf of’ or provide
‘ancillary to’ the HSE, the difference between them may be largely historical and no longer
apparent.
26
National Disability Authority (2010). Advice paper to Value for Money and Policy Review of Disability Services. Dublin,
National Disability Authority
27
28
Non health related services, such as education, maybe funded via other Government Departments.
Health Service Executive (2012) National Service Plan 2013.
29
National Disability Authority (2010). Advice paper to Value for Money and Policy Review of Disability Services. Dublin,
National Disability Authority
30
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Department of
Health. P.4
31
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Department of
Health. P.4
7|Page
3.6
Funding allocated to non-statutory providers varies considerably with just over one-third of all
providers (34%) receiving less than €250,000 per annum. In total, these providers receive less
than one half a percent (0.4%) of the disability budget allocated by HSE to non-statutory
providers. This contrasts with the top one-fifth of providers (17%) who receive between €10
and €150 million each per annum. In total, these providers receive over 86% of the HSE
disability budget. As such, a relatively small number of providers account for a considerable
32
proportion of the Irish state’s specialist disability service .
3.7
Unlike other international jurisdictions non-statutory providers, who comprise the majority of all
specialist providers, do not engage in a competitive tendering process when commissioned by
HSE to provide services. Rather the historical development of the non-statutory sector in
Ireland has resulted in a sector which has evolved over time to have a ‘negotiated’ rather than
33
‘contested’ procurement relationship with the state .
3.8
Typically, an incremental determination process is employed whereby annual funding is
allocated in a block grant to non-statutory providers using the funding provided in previous
years as an estimate of the budget required to provide the same service in the coming year.
While the term ‘incremental’ may suggest that budgets are automatically increased in
34
successive years, it is possible that budgets may decrease from one year to another .
3.9
Budgetary negotiations between providers and the HSE are formalised under contractual
agreements termed Service Level Agreements (SLAs; where allocations exceed €250,000 per
year) or Grant Aid Agreements (GAA; where allocations are less than €250,000 per year).
Funding is typically distributed from regional HSE Local Health Offices nationwide, or in the
35
case of some of the larger providers directly from HSE .
3.10 Concerns have been expressed regarding the transparency of the incremental determination
process. These concerns include the uncontested nature of the funding and the fact that the
rationale for the initial allocation of funding may no longer be apparent, most especially for
36
more established services who have received incremental funding over many years .
3.11 In addition, there are concerns that funding is determined on the basis of places (e.g. one
residential place; one day service place) rather than individual need (e.g. greater funding for
37
those with higher support needs) . This has resulted in per capita funding variations across
regions and service providers, meaning that individuals with similar needs receive widely
differing funding depending on the region they live in and the provider they receive services
38
from .
32
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Department of
Health. P.37
33
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision
of Disability Services by Nonprofit Organisations. Dublin, Government of Ireland. P.13
34
National Disability Authority (2011). The introduction of individual budgets as a resource allocation system for disability
services in Ireland. Dublin, National Disability Authority. P.22
35
Further details of the distribution of disability funding is outlines in Vega, A., O'Shea, S, Murrin, C., & Staines, A., (2010).
Towards the development of a Resource Allocation Model of Primary, Continuing and Community Care in the Health
Services. Dublin, Dublin City University.
36
Report of the Comptroller and Auditor General Volume 2 (2010). Accounts of the Public Services 2009 Vote
Management. Dublin, Government of Ireland.p.589
37
Comptroller and Auditor General (2005). Report on Value for Money Examination: Provision of Disability Services by
Nonprofit Organisations. Dublin, Government of Ireland. P.9
38
National Disability Authority (2010). Advice paper to Value for Money and Policy Review of Disability Services. Dublin,
National Disability Authority.
8|Page
3.12 The state has acknowledged that service delivery is conducted without standardised methods
for assessing individual need or resource usage; for linking individual need to target outcomes;
39
or for determining costs of individual resources . Preliminary research piloting a standardised
resource allocation model for national use is currently being undertaken by the National
40
Disability Authority .
3.13 While HSE does not have data on total pay costs for disability services, estimates for service
providers in the former Eastern Regional Health Authority suggested that pay costs account for
between 70%-84% of the disability budget. In 2009, the estimated pay bill was approximately
€1.2 billion, which included a substantive increase of 35% in the pay budget from 2005–2009
41
for HSE and some Section 38 providers .
3.14 The largest staff grouping within the sector is support staff (n=11,280; 47%): drivers, catering
staff, attendants, personal assistants, and home helps. Another large staff grouping is that of
nursing, social care and therapists who comprise 43% (n=10,211) of the workforce, indicating
that the Irish disability sector is professionalised to a significant extent. Therefore, changes in
staff mix are estimated to return significant savings. A 10% change in case mix from nursing to
social care staff, for example, is estimated to reduce the cost for care by €3.5 million.
3.15 The Health Information and Quality Authority (HIQA) has statutory responsibility for setting and
monitoring standards on the quality of healthcare services in the public sector. HIQA’s
regulatory role is best known in relation to its Social Service Inspectorate which has
responsibility for the registration and inspection of designated centres, defined as residential
42
st
homes for children, older people and people with disabilities . As of 1 November 2013,
organisations providing residential supports to people with disabilities must comply with the
Health Act 2007 (amended) and National Standards for Residential Services for Children and
Adults with Disabilities, which collectively comprise the regulatory framework for quality
inspections. This framework opens all residential and campus centres to inspection by HIQA
who check for compliance against the National Standards.
3.16 Recent research in this area suggests that quality standards vary nationwide, with some
organisations operating in the absence of formal quality standards while others have gained
43
international awards for excellence . This variety may be perceived as advantageous by
endorsing ‘multiple routes to quality’. It may also, however, reflect a lack of consensus on
defining quality within the disability sector.
39
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Department of
Health
40
See National Disability Authority website
http://www.nda.ie/website/nda/cntmgmtnew.nsf/0/8A76108C3F4680E88025795A003BAE74?OpenDocument
41
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Department of
Health. P.55
42
The Health Act 2007 requires that all “designated centres” are registered and inspected. A designated centre is defined in
Part 1, Section 2 of the Act, as an institution at which residential services are provided by the Health Service Executive
(HSE) or other service providers. It includes, therefore, those run by private companies and voluntary organisations. The
registration and inspection of designated centres is the responsibility of the Social Services Inspectorate (SSI) within the
Authority. The term “residential service” is used to refer to designated centres in the standards.
43
National Economic and Social Council (2012). Quality and Standards in Human Services in Ireland: Disability Services.
Dublin, National Economic and Social Council.
9|Page
4. Recent Developments in National Disability Policy
4.1
Since the publication of Needs and Abilities in 1990, a raft of policies have been developed
aiming to transform disability services from a traditional, and congregated model of care,
towards a model whereby people with disabilities are supported to live a life of their choosing
within their own local communities. This proposed new model of disability service provision is
underpinned by values of person-centredness, inclusion, community integration, participation,
44
independence and choice .
4.2
Key policy documents since 1990 recommending changes to disability support services are
listed in Table 2. A brief review of some of the more salient policies impacting on supports for
people with intellectual disabilities follows.
Table 2: Key disability policy documents since 1990
45
1994
Services to People with Autism.
1996
Towards an Independent Future: Report on the Working Group on Health and Personal
Social Services for People with Physical and Sensory Disabilities.
1996
A Strategy for Equality: Report of the Commission on the Status of People with Disabilities.
1997
Employment Challenges for the Millennium: Report of the National Advisory Committee on
Training and Employment.
1997
Enhancing the Partnership: Report of the Working Group on the Implementation of the
Health Strategy in Relation to Persons with a Mental Handicap.
2001
Quality and Fairness: A Health System for You.
2004
National Disability Strategy.
2006
A Vision for Change: Report of the Expert Group on Mental Health Policy.
2006
Towards 2016: Ten Year Framework Social Partnership Agreement 2006-2015.
2009
Report of the National Reference Group on Multidisciplinary Disability Services for Children
aged 5-18.
2011
National Housing Strategy for People with a Disability 2011-2016.
2011
Time to Move on from Congregated Settings: A Strategy for Community Inclusion.
2011
Report of Disability Policy Review.
2012
New Directions: Review of HSE Day Services and Implementation Plan 2012-2016.
2012
National Review of Autism Services.
2012
Value for Money and Policy Review of Disability Services.
44
National Disability Authority (2010). Advice paper to Value for Money and Policy Review of Disability Services. Dublin,
National Disability Authority.
45
Includes material taken from Department of Health (2012). Value for Money and Policy Review of Disability Services in
Ireland. Department of Health. P16 and National Economic and Social Council (2012). Quality and Standards in Human
Services in Ireland: Disability Services. Dublin, National Economic and Social Council p.27
10 | P a g e
S TRATEGY FOR E Q UALITY : R EPORT OF THE C OMMI SSION ON THE S TATUS OF P EOPLE W ITH
D ISABILITIES
4.3
A Strategy for Equality; the Report of the Commission on the Status of People with Disabilities
46
(1996) , was instrumental in proposing a rights-based approach to disability in Ireland. The
Commission was strongly influenced by international trends promoting the rights of people with
disabilities including the enactment of the American with Disabilities Act 1990, and the
development of the United Nations Standard Rules on the Equalisation of Opportunities for
Persons with Disabilities, adopted in 1993. Following a comprehensive, and pioneering
consultation with people with disabilities and their caregivers, the Commission recommended
wide ranging changes to the manner in which people with disabilities were supported across
many life domains including education, health, housing, research, transport and work.
4.4
Key recommendations from the Commission included the enactment of a Disability Act, the
establishment of the National Disability Authority, and the right to an individual assessment of
need with allied statement of need. The Commission also recommended that the Department
of the Environment, Community and Local Government should develop a comprehensive policy
on housing for people with disabilities with a view to affirming ‘the right of people with
47
disabilities to live as independently as possible, if they so chose’ .
4.5
The rights-based position taken by the Commission was not followed through in subsequent
legislation resulting in the withdrawal of the Disability Bill presented to the Oireachtas in 2002.
Through a renewed process of consultation, the Disability Act was passed in 2005 following
publication of the National Disability Strategy (NDS) in 2004.
48
N ATIONAL D ISABILI TY S TRATEGY & T OW ARDS 2016: T EN Y EAR F RAMEW ORK S OCIAL
49
P ARTNERS HIP A GREEME NT 2006-2015
4.6
4.7
The National Disability Strategy (NDS), launched in 2004, aimed to create a comprehensive
strategy to underpin the participation of people with disabilities in Irish society. The NDS
comprises the following elements:

Disability Act 2005.

Education for Persons with Special Education Needs (EPSEN) Act 2004.

Sectoral Plans devised by six Government Departments.

Citizens Information Act 2007.

Multi-annual investment programme of €900 million targeted at high-priority disability
support services from 2006 to 2009.
Towards 2016, Ten Year Framework Social Partnership Agreement 2006-2015 outlines the
vision, mission and strategic objectives of the NDS. Among many long-term goals aiming to
46
Commission of the Status of People with Disabilities (1996). A Strategy for Equality: Report of the Commission of the
Status of People with Disabilities. Dublin, Stationary Office.
47
Report of the Commission on the Status of People with Disabilities (1996). A Strategy for Equality. Summary available at
http://www.fedvol.ie/_fileupload/Next%20Steps/strategy_for_equality.pdf
48
National Disability Strategy (2004) Available at http://www.justice.ie/en/JELR/NDS.pdf/files/NDS.pdf
49
Department of the Taoiseach (2006). Towards 2016, Ten Year Framework Social Partnership Agreement 2006-2015.
Dublin, Government Publications Office. P.66
11 | P a g e
improve the quality of life of people with disabilities, Towards 2016 notes that ‘every person
with a disability would be supported to enable them, as far as possible, to lead full and
independent lives, to participate in work and in society and to maximize their potential’. Priority
areas for development identified in Towards 2016 included:

assessment for, and access to, appropriate health and education services including
residential care

the development of a comprehensive employment strategy for people with disabilities

the introduction of national standards

the enhancement and integration of supports in line with social welfare commitments

the development of a housing strategy for people with disabilities

the development of information and advisory services for people with disabilities

the continued introduction of accessible public vehicles.
4.8
Implementation of the NDS is monitored since late 2011 by a high level group chaired by the
Minister of State at the Department of Justice and Equality. The National Disability Strategy
Implementation Group (NDSIG) is committed to ‘re-energising’ the National Disability Strategy
via ‘a realistic implementation plan including sectoral plans with achievable time scales and
targets within available resources, while ensuring whole of government involvement and
50
monitoring of the Strategy in partnership with the disability sector’ . A National Implementation
Plan 2013-2015 identifies four high level goals of: equal citizenship, independence & choice,
participation, and maximizing potential. The goals are detailed into an action list identifying the
organisations responsible for implementation, the key performance indicators and the timeline
within which the action should be completed. The Implementation Group is scheduled to meet
four times a year to monitor progress.
4.9
Most recently, a total of six high-level policy documents have been published which propose
radical reform of the disability sector (see Table 2; 2011-2012). This raft of policy is
complimented by other publications emanating from semi-state bodies such as the National
51
52
Economic and Social Council and the Economic and Social Research Institute . The sheer
quantum of policy reflects a prioritisation of reform within the disability sector by Government.
The following section presents a review of some of the more influential policies currently
framing the proposed reform of this sector.
50
Department of Justice and Equality (2012). Policy: National Disability Strategy. Available at
http://www.justice.ie/en/JELR/NDA%20-%20POLICY%20-%202.pdf/Files/NDA%20-%20POLICY%20-%202.pdf
51
National Economic and Social Council (2012). Quality and Standards in Human Services in Ireland: Disability Services.
Dublin, National Economic and Social Council
52
Watson, D., & Nolan, B., (2011). A Social Portrait of People with Disabilities in Ireland. Dublin, Economic and Social
Research Institute.
12 | P a g e
A V ISION FOR C HANGE : R EPORT OF THE E XPERT G ROUP ON M E NTAL H EALTH P OLI CY
53
4.10 The Expert Group on Mental Health Policy outlined ‘A Vision for Change’ in the national
configuration of mental health services. Specific recommendations were made for the
development of services for people with intellectual disability who have co-existing mental
health difficulties. The report noted the dearth of specialist services for this population, and the
considerable barriers faced by people with intellectual disability accessing mainstream mental
health services. In addition, epidemiological data was deemed poor resulting in widely varying
prevalence estimates of those with intellectual disability and mental health conditions.
4.11 A Vision for Change advocated that a spectrum of mental health services be provided for
people with intellectual disability. These services should include health promotion, early
detection, crisis management and specialised mental health services. Intellectual disability
services should provide support in the areas of health promotion, early detection and crisis
management. The establishment of specialist ‘mental health in intellectual disability’ teams
(MHID) was recommended to provide specialised mental health services. These teams should
take referrals from general practitioners and be established on a catchment area basis, with
three teams proposed per 300,000 population. The MHID teams should be distinct and
separate from, but closely linked to, pre-existing multidisciplinary teams located within
intellectual disability services.
4.12
In addition to the proposed new configuration of services, A Vision for Change called for the
establishment of a national forensic unit, greater awareness of and support to older persons
with intellectual disability who are at risk of dementia, and the enactment of mental capacity
legislation to address those involuntarily detained in intellectual disability settings. It is now
anticipated that this legislation, term the Assisted Decision Making Capacity Bill, published in
2013 with an expected enactment in 2014, will provide for the statutory assumption of capacity,
define assessment of capacity as time- and issue-specific, and will introduce a system of public
guardianship.
R EPORT OF THE N ATIONAL R EFERENCE G ROUP ON M ULTI DISCIPLINARY D ISABILITY S ERVICES
54
FOR C HIL DREN A GED 5-18 Y EARS
4.13 The Report of the National Reference Group on Multidisciplinary Disability Services for Children
Aged 5-18 Years, published in 2009, aimed to address the wide variation in services for
children with a disability throughout Ireland. Currently services are provided by both statutory
and non-statutory agencies, some of which provide generic supports to children with disabilities
and others which are disability specific. Of these, some generic teams are employed solely by
HSE, others by non-statutory agencies, with some having employees from both sectors working
in integrated partnerships.
4.14 Progressing Disability Services for Children and Young People is a national programme aimed
at reconfiguring children’s services based on the recommendations of the National Reference
Group report. The programme aims to achieve a unified approach to delivering disability health
services ensuring that there is a clear pathway to services irrespective of where individuals live,
or of the nature of their disability.
53
Government Publications (2006). A Vision for Change: Report of the Expert Group on Mental Health Policy. Dublin,
Government Publications.
54
Health Service Executive (2009). Report of the National Reference Group on Multidisciplinary Disability Services for
Children aged 5-18. Dublin, Health Service Executive.
13 | P a g e
4.15 The programme proposes that children should receive services as close to their home as
possible. Primary Care Teams which provide mainstream services within the community are the
first level of support. It is envisaged that typically all children who have one area of need would
receive services from primary care. Children with more complex needs may be referred to
early intervention or school aged teams, termed Network Disability Teams. Referral forums
should be established in each region to coordinate referrals for children with complex needs. All
teams should have access to Specialist Disability Services where a high level of expertise is
required. The aspiration is that no child be left without a service.
4.16 The programme is led by HSE in cooperation with the non-statutory provider organisations, the
Department of Health and the Department of Education & Skills. A National Coordinating
Group (NCG) monitors the programmes progress while implementation is the remit of the four
Regional and Local Leads in each of the four Health Service Executive Regions. Local
Implementation Groups are supported throughout the duration of this programme through the
development and dissemination of guidelines and discussion papers.
4.17 While the team composition of those working in children’s services will, by definition, change
during this restructuring, HSE note that staff in nearly all circumstances are expected to be
employed by their current employer, whether statutory or non-statutory. This restructuring of
children’s services aims to introduce a greater level of engagement and cooperation among
disability and generic health services. With greater coordination of services, it is hoped that
children with disabilities will no longer be denied a service on the basis of their geographical
location or the severity of their disability.
T HE N ATIONAL H OUSING S TRATEGY FOR P EOPLE W ITH A D ISABILITY 2011-2016
55
4.18 The National Housing Strategy for People with a Disability 2011-2016 outlines a framework for
the delivery of housing for people with disabilities through a policy of mainstreaming. Nine
strategic aims are identified including: equality for people with disabilities to access the full
range of housing options; the development of national protocols to coordinate effective
interagency cooperation involving all relevant agents in the provision of housing for people with
disabilities; consideration of the specific housing needs of people with disabilities moving from
institutional to community-based settings; and improvement of the collection and use of
information regarding the nature and extent of the housing needs of people with a disability.
4.19 The housing strategy identified an array of mainstream housing supports which, to date, are
rarely availed of by people with disabilities, including social housing support and the use of the
private rental sector to meet social housing need. In particular, the potential of private rental
schemes were examined including the Rental Accommodation Scheme (RAS) which provides
accommodation within the rental sector to recipients of rent supplement under the Social
Welfare Scheme, and the Social Housing Leasing Initiative (SHLI) which leases properties from
private owners for use by those on local authority waiting lists. Voluntary and Cooperative
Housing was also noted, in particular, the Capital Assistance Scheme (CAS) which permits
housing bodies to provide accommodation to meet certain specific categories of housing need,
55
Department of the Environment, Community and Local Government (2011). National Housing Strategy for People with a
Disability 2011-2016. Dublin, Department of the Environment, Community and Local Government. Much of the preliminary
work for the National Housing Strategy for People with a Disability was undertaken in a report prepared by Michael
Browne ‘Citizens Information Board/Disability Federation of Ireland Social Policy Report’ (2007). The Right Living Space:
Housing and Accommodation Needs of People with Disabilities. Dublin, Citizens Information Board/Disability Federation
of Ireland. This report recommended that a ‘continuum of housing provision’ be made available to people with disabilities.
14 | P a g e
including people with disabilities. These, and other schemes, were considered as potential new
delivery mechanisms to address the provision of housing for people with disabilities.
4.20 The Strategy notes that housing associations availing of schemes such as those outlined
above, and providing care and health related supports for tenants with disabilities, can apply for
funding from HSE for the health related elements of this service. To ensure effective
coordination between all of the relevant agents involved in the provision of housing and related
supports, including the Department of the Environment, Community & Local Government, the
Department of Health, local authorities, the HSE and the Irish Council for Social Housing,
national protocols were developed to formalise these working relationships. In addition, local
authority-led Housing and Disability Steering Groups will be established to coordinate the
implementation of the strategy at local level.
4.21 Noting that people with intellectual disabilities traditionally do not apply for housing supports,
the Strategy proposes that where individuals express a wish to live independently or with
supports in the community, they undergo an assessment of housing need to determine what
housing supports may be required, from which they receive a statement of housing need. This
individual assessment of housing need is proposed to align with Part 2 of the Disability Act
2005, and will gather information on the individual’s disability, the level of supports required and
currently provided, and the type of accommodation deemed most appropriate to best meet the
individual’s disability-related needs. The assessment will be used by local housing authorities
to determine the type of housing supports deemed most appropriate to meet the individual’s
need.
4.22 Assessments will determine not only the adequacy of an individual’s current residential
situation, but will also consider the likelihood of a housing need arising in the future. That is,
assessments will be inclusive of individuals who are not currently experiencing acute need, but
who may do so in future, for example, in the event of an ageing parent dying or no longer being
able to provide care.
4.23 The Strategy made specific reference to people with disabilities currently residing in institutional
settings, noting that research over three decades consistently indicates people with disabilities
experience better quality of life in community settings than in institutional care. The report also
noted more recent research comparing evidence on quality outcomes for residents in dispersed
and clustered community housing, which found that dispersed housing was superior to
56
clustered housing on the majority of quality indictors studied . In light of this evidence-base,
the Strategy endorsed recommendations from the HSE Congregated Settings Working Group
(see below) that congregated settings close over a seven year period, and that residents be
moved to a range of community-based living options including individual tenancies.
4.24 Implementation of the National Housing Strategy is detailed in the ‘National Housing Strategy
57
for People with a Disability 2011-2016 National Implementation Framework’ . The implementation plan identifies a newly established Housing Sub-Group led by the Housing Agency as the
key agent providing guidance to local authorities on the provision of housing for people with a
disability. This sub-group coordinates with related stakeholders including the National Consultative Forum on Disabilities and the HSE Congregated Settings National Implementation
Group. The report notes that ‘significant financial implications arise for the local government
sector in respect of Government proposals regarding the deinstitutionalisation of people with
56
Mansell, J. and Beadle-Brown, J., (2008). Dispersed or Clustered Housing for Disabled Adults: a Systematic Review.
Canterbury: Tizard Centre.
57
Department of Environment, Community and Local Government & Department of Health (2012). National Housing
Strategy for People with a Disability 2011-2016 National Implementation Framework.
15 | P a g e
disabilities’ (p.5). The report further notes that the proposed seven year timeframe of deinstitutionalisation, as outlined in the HSE’s Time to Move on from Congregated Settings detailed below, is unlikely to be realised. The challenge is to find expenditure to meet the estimated required budget of €1.9 million per annum, rising incrementally €1.9 million per year throughout
the seven year timeframe to a total annual expenditure of €13.3 million thereafter. As an interim step, the Department of Health provided a ring-fenced €1 million fund in 2013 to meet social
housing costs within that year to finance an expected 150 units.
T IME TO M OVE ON FROM C ONGREGATED S ETTINGS : A S TRATEGY FOR C O MMUNITY
58
I NCLUSION
4.25 Established by the Primary and Community Care Directorate of the HSE, the Working Group on
Congregated Settings was charged with developing proposals to deliver community-based,
person-centred options for people with disabilities who currently reside in congregated settings.
Specifically, the Working Group were charged with: identifying the number of congregated
settings nationwide and the number of residents supported within those settings; identifying the
cost of the current provision; and determining a costed implementation plan for the transition of
identified residents from congregated to community-based settings.
4.26 All statutory and non-statutory organisations that support residents with intellectual, physical or
59
sensory disabilities who were registered with the national disability databases were surveyed
to identify residential settings where ten or more residents shared a single living unit, or where
60
the living arrangement was defined as campus based .
4.27 Nationwide 72 congregated settings were identified located in 20 counties, ranging in size from
settings with one unit, to the largest setting which comprised 34 units. Twenty-nine of the
settings were single unit settings, supporting between 8-52 residents in each unit. The largest
setting comprised 34 units, providing 340 places. On average, 18 residents were supported in
each unit.
4.28 Transfers and admissions to these settings were retrospectively examined for a ten year
period, from 1999 to 2008. Throughout this time period, over half of all settings (64%) had
made arrangements for service users to transfer to the community; however, a significant
proportion had not (36%). In total, 619 people were identified as having transferred out of
congregated settings over this time period. The numbers of those being admitted to
congregated settings during the same time period, however, was 692, indicating that
admissions exceeded transfers over the decade of review.
4.29 A total of 4,099 residents, of whom 3,802 had intellectual disabilities, were identified living in
the 72 congregated settings in 2008. These residents comprised just under half of all residents
with intellectual disabilities registered on the NIDD as availing of full-time residential supports
nationwide in that year. The profile of residents in congregated settings revealed that the
majority had a moderate (34%) or severe (44%) of level of intellectual disability, over 80% had
an additional disability, almost half were aged 40-60 years, and almost three-quarters had been
58
Health Service Executive (2011). Time to Move on from Congregated Settings: A Strategy for Community Inclusion.
Report of the Working Group on Congregated Settings. Dublin, Health Service Executive.
59
National Intellectual Disability Database and National Physical and Sensory Disability Database managed by the Health
Research Board on behalf of the Department of Health.
60
The survey excluded organisations supporting individuals on the autistic spectrum and organisations defined as
intentional communities. Individuals supported in de-designated units located on the grounds of psychiatric hospitals but
designated to intellectual disability supports were included.
16 | P a g e
living in their current setting for over 15 years. An assessment of the dependency level of
residents revealed that 37% could speak in sentences, 54% engaged in behaviours that
challenge and 57% took psychotropic medication. While the data report a high degree of
support needs among these residents in relation to everyday activity, the Project Manager’s
reports following site visits to many of these settings indicated that these support needs were
no different from those of many people with intellectual disability currently being supported in
the community.
4.30 The condition of some of these settings is best described by an extract from the Project
Manager’s observations following a site visit:
“A unit for 15 severely disabled people, two have significant medical problems which result in
their being peg fed. All others need high levels of support in all the essential activities of daily
living. The number of staff on duty at any given time is three. There are significant periods in
the day where only two people are on duty to cover the basics i.e. getting people up, dressed,
washed and fed. Service users either do not have a day programme or, if they do, it is a very
limited session, maybe once or twice per week. Some people get no day provision at all”.
4.31 The lack of appropriate day service activities was consistently evident. Over one quarter of all
residents in these settings had no, or a limited, day programme delivered in their ward. Less
than one in five was involved in off-campus activities. The report notes ‘routines typically
appear to be characterised by early-bed-times with the median times for the first people in a
unit going to bed at 9pm, and the last at 10.30pm’ (p.56).
4.32 Staffing levels within these settings were a cause for concern. A total of 5,368 staff personnel
were employed across all centres where data was available, a ratio of 1.65 staff per resident.
These levels were deemed by the Project Manager to be insufficient ‘to respond to the needs of
these clients, to respect their rights and to treat them with the dignity they deserve’. The
Project Manager noted that ‘staff are aware that thinking has moved on and there is a lot of
discussion about person centredness, rights, quality of life etc. Many people expressed their
frustration at wanting to be able to respond to their clients in this way but not having the staff to
do so’ (p.58).
4.33 Data gathered on costs of the congregated settings revealed a total cost of €417 million, with
an average per capita cost for each resident of €106,000, of which 83% was pay costs. There
was, however, significant variation in per capita costs, which ranged from €37,394 to
61
€231,575 . One quarter of all centres had a per capita cost under €77,000; half had per
capita costs between €78,000 and €130,000, and the remaining quarter of centres had per
capita costs of over €130,000.
4.34 A national policy and support framework was proposed by the Working Group for the
transitioning to community-based settings of all residents identified in the report. Within the
framework of the National Disability Strategy, the Department of Health was recommended to
adopt a clear policy on the closure of the congregated settings. The policy should apply to all
residents, irrespective of the severity of disability, and should state that no new congregated
settings should be developed, no new admissions should be sanctioned and that the target
61
An overriding issue commented on by service providers in Wales, following a site visit, was the disparity in salaries
between UK and Irish support staff. Gross annual salaries in the UK were cited as £13,319 for Support Workers, £21,835
for Service Managers and £31,077 for Area Managers. These figures can be contrasted with annual gross salaries in Ireland
of €34,357-€45,939 for Social Care Workers and €55-598-€63,885 for Social Care Managers. The Working Group noted
that notwithstanding currency differences, Irish support staff report higher salaries than their UK counterparts. In addition,
UK providers were free to determine salary scales unlike Irish providers who were typically tied to salary scales set by the
Department of Health
17 | P a g e
timeframe should specify completion within a seven year period. This policy should be
reflected in the National Housing Strategy for People with a Disability ensuring the eligibility of
people with disabilities to publically funded housing supports. A National Implementation
Group, established within the framework of the National Disability Strategy, should oversee the
implementation of the Working Group’s recommendations.
4.35 The Working Group detailed the new model of support which they recommend should comprise
a broader plan than mere accommodation; arrangements for housing must form part of a wider
person-centred support plan of community inclusion. The new model proposes that those
62
currently resident in congregated settings would have access to dispersed housing in local
63
communities with individualised supports (‘supported living’ ) designed to meet individual
need. While some individuals may choose to live on their own, others may choose to share
with other people. Where home-sharing with other people with a disability is the preferred
option, the Working Group recommends that no more than four co-residents share one
dwelling.
4.36 The Working Group recommended that housing authorities and the HSE should have distinct
responsibility for the needs of people with disabilities living in the community. HSE should
provide for the health and personal needs of residents while housing authorities should provide
for housing need. In addition, the governance, management and delivery of residential
64
supports should be separate from the provision of inclusion supports , thereby ensuring that
the person with a disability has maximum choice of support providers.
4.37 Regarding the proposed funding stream for the reconfiguration of residential supports to those
in congregated settings, the Working Group stated that the current level of resources being
invested in congregated settings would be sufficient to implement the recommended changes.
The report noted that bridging funds may be required for a period while both the newer
community residences and the older congregated settings are operating simultaneously.
4.38 The accommodation needs of those transferring from congregated settings should be met
through a combination of new builds, local authority housing, voluntary housing, leasing, private
rental, and purchasing or leasing from voluntary housing associations. Irrespective of an
individual’s preferred option, all those transferring from congregated settings should be
assessed for eligibility for Rent Supplement or Rental Accommodation Schemes.
4.39 Local implementation teams within each Integrated Service Area (ISA) are recommended to
take local responsibility for ensuring that local planning and delivery systems are present to
implement this policy. These local teams should be monitored by a National Implementation
Group to ensure national oversight. Accelerated Learning Sites, providing robust examples of
evidence-based transitions to community living are recommended to showcase good practice,
and to provide learning experiences through a comprehensive evaluation. The implementation
of these actions is ongoing from the establishment of the National Implementation Group in
October 2011.
62
Dispersed housing is defined as apartments and houses of the same types and sizes as the majority of the population live
in, scattered throughout residential neighbourhoods among the rest of the population.
63
Supported living is defined as providing the range and type of individualised supports to enable each person to live in the
home of their choice and be included in their community. Forms of individualised supports include in-home support (e.g.
paid staff, smart technology), inclusion support (e.g. facilitating links with the local community), community-based primary
care and specialist supports (e.g. public health nurse, home help), work/further education, person-centred planning and
advocacy.
64
Inclusion supports are defined as the main means of meeting the individual’s support and lifestyle requirements and
include the person’s immediate network of supporters, which may include paid staff, as well as friends, community contacts
and volunteers.
18 | P a g e
N EW D IRECTIONS : R EVIEW OF HSE D AY S ERVICE S AND I MPLE ME NTATION P LAN 2012-2016
65
4.40 Established by the Primary Community and Continuing Care Directorate of the HSE in 2007,
the National Review of HSE Funded Adult Day Services sought to examine day services for
people with physical, sensory and intellectual disabilities and people with mental health
difficulties, and to make proposals for a ‘modern service that can respond to these unique and
diverse individual needs’ (p. 13).
4.41 The National Working Group undertook four key tasks:

a national census of day provision

a consultation with stakeholders

a programme of international and Irish research

a demonstration phase of innovative models being piloted by provider organisations.
4.42 The census undertaken by New Directions revealed considerable diversity in the types of day
services currently being offered to people with physical, sensory and intellectual disabilities,
and to those with mental health difficulties. This diversity reflected the lack of any clear
66
definition of what comprises a day service . To address this challenge a typology of 13 day
services was developed (see box). These categories provide a first step in clarifying the types
of activities that may be deemed to comprise a ‘day service’ for people with disabilities in
Ireland.
4.43 A total of 81 organisations, over 90% of which are non-statutory organisations, were identified
as providing day services to over 25,000 individuals with disabilities in 817 locations
nationwide. The large number of locations is thought to reflect a move away from congregated
day services towards smaller, community-based services. In total, 65% of these locations
provide services for people who have a primary diagnosis of intellectual disability, a group who
comprise over 13,000 individuals, that is, over half of all recipients of day services.
4.44 The HSE budgetary allocation for day services was determined for 2007 and totaled €307
million. An additional €21.5 million was sourced within the same year by providers to deliver
services. With regards to staffing, over 5,600 staff members were identified as working to
deliver day service provision, most of whom were employed in the capacity of
Supervisor/Instructor or Care/Support personnel.
65
Health Service Executive (2012). New Directions: Review of HSE Day Services and Implementation Plan 2012-2016.
Dublin, Health Service Executive.
66
There are no nationally agreed definitions of any day services with the exception of ‘rehabilitative training’
19 | P a g e
Day services as defined in the context of New Directions
Day Care Programmes Services for those with higher support needs focusing on health care.
Day Activation/Activity Typically enhancing skills such as independent living, recreational
activities, etc.
Active Community Participation/Inclusion Programmes to facilitate community inclusion.
Sheltered Work/Therapeutic Work activity in a location with no third party involvement, no
contract work, not open to the public.
Sheltered Work Commercial Work activity which includes contract work and contact with
public - money is exchanged for goods or services.
Sheltered Work –Like Work Work with discretionary ‘top up’ for individuals who work in HSE
or provider organisations in ‘like work’ positions e.g. kitchens.
External Work – Like Work Work with discretionary ‘top up’ for individuals who work in open
employment e.g. supermarket work.
Open Employment – no supports Work in the open labour market with no supports / support
may have been available but is now withdrawn.
Supported Employment Paid employment in open labour market with employee status.
Sheltered Employment Work in an enterprise specifically set up to employ people with
disabilities.
Rehabilitative Training Training programmes to equip people with social and work-related
skills.
Education Programmes Programmes funded by Department of Education.
Voluntary Work
4.45 The consultation with stakeholders, including people with disabilities, family members, carers
and people working within the disability field, provided a mixed response to the quality of day
services available. While many commented on the wide choice of activities available under
different programmes including computers and art classes etc., those who worked in intellectual
disability services were critical of the ‘over-nursing’ of people using the services, noting that
while many services still provide laundry and meals, ‘we would prefer to see service users
provided with the skills necessary to carry out such activities independently’ (p.50).
4.46 Among many suggestions gleaned from the consultation process, stakeholders called for day
services that would support individuals undertake worthwhile activities; to do ‘ordinary things in
ordinary places’ that would be tailored to individual need. Independence was considered a key
outcome yet was, according to stakeholders, restricted by finance. Independence was also
restricted by staffing levels with service provider organisations commenting that low staffing
ratios resulted in health and safety concerns. People with disabilities also commented on the
low staffing ratios, stating that insufficient staff numbers resulted in a lack of one-to-one support
and people feeling they were being ‘controlled’ rather than being facilitated.
4.47 The National Working Group developed a new approach to day service provision based on the
principles of person-centredness, community inclusion & active citizenship and high quality
services. The approach is entitled New Directions: Personal Support Services for Adults with
Disabilities and is operationalised by a suite of 12 personal supports. Service providers are
encouraged to deliver all 12 supports to people availing of their services, and to work with each
individual to tailor a programme of support that meets individual need.
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4.48 The 12 supports include support for (1) making choices and plans (including person centred
67
planning); (2) making transitions and progression; (3) inclusion in one’s local community ; (4)
accessing education and formal learning; (5) maximising independence; (6) personal and social
development; (7) health and well-being; (8) accessing bridging programmes to vocational
training; (9) accessing vocational training and work opportunities; (10) personal expression and
creativity; (11) having meaningful and social roles; and (12) influencing service policy and
practice.
4.49 In reconfiguring day service provision, the National Working Group identified a number of areas
of concern in current practice. Consideration is required for ‘vulnerable’ groups identified in the
census of day service recipients, specifically those under 18 years and those over 65 years for
whom current provision may not best meet need. Another area of concern is the status of
some individuals with disabilities who are currently engaged in ‘work like activities’. In
particular, there is a concern that those engaged in ‘sheltered employment’ and those engaged
in ‘external work–like work’ may be eligible for legal status as ‘employee’, a status that would
afford them certain employment related privileges. Finally, for those who are engaged in
employment activities, the National Working Group propose that HSE should not be the
responsible authority delivering these services, but rather that consideration should be given to
the transfer of this responsibility to the Department of Jobs, Enterprise and Innovation.
4.50 The implementation of New Directions will require each service provider to develop its’ own
implementation plan for the delivery of the 12 personal supports based on the principles of
person centred planning. Guidance will be provided in the format of a Quality Assurance
System setting out the criteria that service providers must follow to deliver these supports, and
a self-assessment tool will be available to assist service providers benchmark their existing
provision against each of the new supports and make the necessary changes to align their
68
service delivery to the new system . In implementing these changes, the National Working
Group calls for a national change management process to be led by HSE which would support
the roll out of demonstration projects, three year plans to be developed by all service provider
organisations and for the development of local coordination between specialist and mainstream
providers to build a joint approach to community inclusion.
V ALUE FOR M ONEY AND P OLICY R EVIEW OF D ISABILITY S ERVICES
69
4.51 The Value for Money and Policy Review of Disability Services was an extensive evaluation of
the effectiveness and efficiency of disability services in Ireland, both statutory and nonstatutory, funded under the Health Vote (see Section 3.2). It was conducted under the auspices
of the Government’s programme of Value for Money Reviews from 2009-2011, supported by an
Expert Reference Group on disability policy who were charged with assessing the extent to
67
Being part of one’s own community is defined as ‘knowing people in the community who are not involved in the provision
of services; living and working in ordinary places; being able to access publically funded community services such as
libraries, public offices and adult education programmes; using local services and facilities, such as shops, cinemas and
pubs; being able to contribute to and be part of specialist community associations for people with disabilities; being able to
contribute to and be part of mainstream community associations such as residents associations, sports clubs and voluntary
bodies; volunteering; being able to vote and to influence local planning’.
68
The Priority Issues of Concern (PIOC) element of New Directions comprised a project team established in 2009 which
addressed a number of key priority issues requiring immediate action. These priority areas included clarifying the role
of HSE in employment, training and work; strengthening the HSE system for planning, monitoring and quality assurance;
and strengthening the capacity for person-centredness.
69
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health.
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which objectives of the state’s Disability Services Programme were met, and if not, to propose
policy amendments.
70
4.52 The Expert Reference Group (ERG) , reporting in 2011 prior to the publication of the Value for
Money and Policy Review of Disability Services, noted the disparity between current policy, as
articulated in Towards 2016 (see section 4.7), and the perception and expectation of people
with disabilities regarding their current support services. While ‘full and independent lives’ are
endorsed by policy, the ERG concluded that the reality for many people with disabilities is that
services are congregated, overly professionalised, and have segregated people with disabilities
from their local communities.
4.53 Endorsing a submission to the Value for Money and Policy Review by the National Disability
Authority, the ERG argued that current services were resource-intensive, based on a medical
model of disability, and largely delivered in segregated settings with high staff/service user
ratios. The ERG commented that this model ‘must also be considered in light of the current
environment with regard to the economic climate, changing demographics and changing
expectations’ (p.11). The ERG concluded that despite considerable investment, including a
multi-annual investment programme of €900 million targeted at high-priority disability support
services from 2006 to 2009 (see section 4.6), the current model of service delivery had not met
its objectives. In addition, the ERG concluded that no evidence existed that a more costeffective version of the same policy would be any more effective. To achieve the policy
objectives articulated in both Towards 2016 and the public consultation conducted for the
review, the Value for Money and Policy Review supported the ERG in concluding that the
approach used to achieve these policy objectives must change (p.160).
4.54 The ERG (with modifications proposed by the Value for Money and Policy Review in italics
which specifically relate to funding from the Health Vote) proposed a policy framework that
aims to ‘realise (contribute to the realisation of) a society where people with disabilities are
supported, (as far as possible), to participate (to their full potential) fully in economic and social
life, and have access to a range of quality (personal social) supports and services to enhance
their quality of life and wellbeing’ (p.12 ERG). The amended statement is endorsed by the
Value for Money and Policy Review as an expression of ‘a revitalized and re-orientated
Disability Services Programme’ (p. 164).
4.55 This policy proposal has two overarching goals:

Goal 1: Full inclusion and self-determination for people with disabilities.

Goal 2: The creation of a cost-effective, responsive and accountable system which will
support the full inclusion and self-determination of people with disabilities.
4.56 The ERG proposed reframing service delivery towards a model of individualised supports
delivered, where possible, via mainstream services. The new model is similar to that available
in other international jurisdictions where the allocation of state funding is based on a
standardised assessment of individual need, as opposed to the current allocation based on an
incremental determination process awarded directly to provider organisations (see section 3.8).
Individual support plans will be developed based on a standard assessment of need. An
individual budget will be determined from which support services are purchased. The individual
will therefore be the commissioner of his or her own support services, whether through direct
payments (where the budget is managed directly by the individual) or alternative mechanisms
70
Department of Health (2011). Report of Disability Policy Review. Prepared by Fiona Keogh PhD on behalf of the Expert
Reference Group on Disability Policy. Dublin, Department of Health.
22 | P a g e
including brokerage (where the person identifies supports which are then commissioned and
purchased by a third party).
4.57 In addition to examining policy and proposals for reframing disability support services, the
Value for Money and Policy Review examined the efficiency and effectiveness of disability
services nationwide. This comprised a comprehensive review of disability services expenditure
for 2005-2009, a public consultation, and a suite of research undertaken by the National
Disability Authority examining specialist disability services in six international jurisdictions.
4.58 In examining the governance of the Disability Services Programme the Review revealed that
although the Disability Unit of the HSE had responsibility for the planning, monitoring and
evaluation of the disability programme, resource allocation and operational delivery at the time
of publication rested with the HSE Regional Directors of Operations and the Integrated Service
Area Managers. The Review proposed that a Director of Disability Services be appointed to
lead the implementation of the Value for Money and Policy Review. In addition, a clear line of
responsibility was called for from local, to regional, to national level.
4.59 The Value for Money and Policy Review proposed the introduction of a competitively tendered
process from which services would be commissioned. Successful tenderers would formalise
their contract with HSE via Service Level Agreements, where specified outcome and
performance indicators would be used to monitor progress. The Review also proposed
allocating funding based on individual need, in contrast to the existing incremental
determination process. Within the current system, funding is allocated to places, for example,
indicative costs for residential and day places are estimated at €80,000 and €14,000 per
71
annum respectively . These ‘average’ costs are currently applied across all models of
services irrespective of individuals’ specific support needs.
4.60 In reviewing the ‘inputs’ to the Disability Services Programme, the Review noted that ‘the HSE
does not maintain sufficient information on the sources of funding for voluntary providers
because it does not systematically collect data on funding sources and reconcile these to
annual accounts’ (p.47). The Review aimed to clarify, for the first time, the financial and
staffing components of the Disability Services Programme. Taking 2009 as the year under
study, the full disability budget was estimated at €1.859 billion, of which €1.789 billion (net €1.5)
was funded by HSE. Non-exchequer funding of services, typically through private donations,
was estimated at 5% to 7% of the full budget.
4.61 An examination of funding for the Disability Services Programme from 2005-2009 revealed an
increase in expenditure of 34% over this time period. The increase is thought to reflect
72
investment from the multi-annual investment programme (MAIP; see section 4.6), pay awards
and increments, an increase in staff numbers and an increase in the overall allocations
awarded to providers.
4.62 Pay costs were estimated at 84% of total expenditure and, for HSE and Section 38
organisations, were found to have increased 35% from 2005 to 2009. These increases reflect
increased staffing levels (up 25% from 2005-2009) and the impact of national pay agreements
which saw salaries for social care workers increase 16%-20% during the time period, while
salaries for consultants rose 25%. A HR staff census classified staffing within the Disability
Services Programme to six categories; ‘medical & dental’, ‘nursing’, ‘health & social care
71
The Value for Money and Policy Review notes that neither the HSE nor the Department of Health have provided an
explanation as to how these costs were arrived at (p.54).
72
The Value for Money and Policy Review notes deficiencies in the collection and reporting of performance data for MAIP
leading to a lack of clarity regarding ‘how agencies used MAIP money for their clients in terms of new services, existing
services, financing core deficits funding and additional staff’ (p54).
23 | P a g e
professionals’, ‘management and administration’, ‘general support’ and ‘other patient and client
care’. The census revealed that the staff case mix remained stable from 2005-2009 with most
staff being classified as ‘other patient and client care’ (38%) or ‘nursing’ (24%). All staff
categories reported increases in staff numbers from 2005-2009 with ‘medical & dental’ staff
reporting the greatest increase at 80%. Average salaries across these staffing categories for
2009 were €120,000 for ‘medical & dental’, €61,000 for ‘management & administration’ and
‘health and social care professionals’, €55,000 for ‘nursing’ and €38,000 for ‘support staff’.
Recommendations were made for capping salaries for those at CEO level (average salary
€150,000) and senior management to consolidated pay agreement rates.
4.63 The professional nature of the workforce was noted: 43% staff were classified within ‘nursing’,
or ‘social care/therapy professional’ grades. The Review estimated that substantial efficiencies
could be accrued to the disability programme by altering the current staff mix, noting that a 10%
change to non-professional personnel would reduce the cost of providing care by €3.5 million
annually. The Review recommended that the HSE should begin the process of substituting
non-professional qualified care staff (care assistants) for professionally qualified care staff to
achieve pay savings.
4.64 Expenditure to private, for-profit organisations was also reviewed. In total, €21.7 million was
paid to 105 private, for-profit organisations in 2009, 1.25% of net disability expenditure. These
organisations were funded to provide services including residential, day, respite and home
supports. Little detail was available on the persons in receipt of these services, however, the
Review notes that as most service providers were described as ‘nursing homes’ it is likely that
they are providing residential supports. As nursing homes, these organisations are subject to
statutory inspections by HIQA. The Review recommends that a national protocol be developed
to govern the use of private, for-profit organisations and that an individualised resource
allocation model within the disability sector should be applied to these providers.
4.65 In reviewing the ‘outputs’ of the Disability Services Programme, the Review noted difficulties in
determining the effectiveness of services provided to people with disabilities. A preliminary
attempt to gather data revealed that units of output were undefined for many forms of service
provision. Some ‘complex’ outputs (e.g. respite services, early intervention services) were
challenging to define and measure. Others (e.g. residential and day services) were considered
easier to quantify and cost. Given that these less complex outcomes were responsible for the
largest proportion of the disability pay expenditure, a pragmatic decision was made to restrict
analysis to the effectiveness of these more tangible outcomes. Effectiveness was assessed by
examining the number of places available, the number of places occupied, the staff/client
support ratio and the cost per place.
4.66 Table 3 below presents data on the average costs for a person with a disability receiving five
different services; three day care and two residential. These data reveal the variation in cost
for individuals with different support needs, ranging from ‘minimum support’ to ‘intensive or high
support’. Of interest is the marked disparity between these costs and the ‘flat rate cost’
allocated to providers. The Review noted, for example, that the largest cohort of people
73
receiving residential services have high level support needs , costed in Table 3 at
approximately €140,000 per place. The flat rate cost for a residential place awarded to service
providers is €70,000, half of the funding required for those with high support needs. This
situation has resulted in service providers negotiating with the HSE for funding for two notional
places for one individual (p.119).
73
157 individuals with complex needs in 7 day residential high support setting had a direct pay cost each in excess of
€150,000. The total cost for these individuals was 10% of pay expenditure for 7 day high support service users.
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Table 3: Summary analysis of data on national resource usage groups
Average cost per person from
minimum support to high/intensive
Day service for children with Intellectual Disability
€8,681-€61,587
Day service for adults with Intellectual Disability (activation and
day support)
Day service for adults with Intellectual Disability (work like)
€8,101-€69,718
€17,227-€39,126
5 day residential services for people with Intellectual Disability
€33,624-€62,402
7 day residential services for people with Intellectual Disability
€35,086-€139,739
Table
3: National
Resource
Usage
Groupsthe size of service
4.67 The Review also examined key
drivers
of residential
costs
including
agencies and characteristics of service users. The Review noted marked variation in the costs
of services by region and by type of service provider (HSE or non-statutory). No clear reason is
apparent for this. Potential differences in staffing costs were examined, specifically between
HSE and Section 38 organisations, who must apply consolidated salary pay scales, and
Section 39 organisations, who are not obliged to do so. There was no evidence that the pay
rate flexibility of Section 39 organisations resulted in lower operational costs. Although smaller
agencies were found to have higher costs, the pattern was not consistent through to the larger
agencies where there were variations in cost relative to size. The size of residential units, in
contrast, were found to relate to costs, with settings supporting five or more residents costing
less than those supporting four individuals or fewer.
4.68 Costs were also related to disability type, with higher costs observed to support those with
autism spectrum disorder, or autism spectrum disorder and intellectual disability, when
compared with other disability types. These findings, however, were thought to be confounded
by the over-representation of these groups in congregated settings. Those with exceptional
need, typically defined as ‘extremely’ challenging behaviour, most often in combination with
autism spectrum disorder and mental health difficulties, reported high costs in excess of
€150,000 per annum. In contrast, most service users with challenging behaviour were
supported in residential settings with others, but received higher levels of support and/or more
staff time. As such, only a small number of service users with challenging behaviour require
exceptional resource requirements.
4.69 One of the main cost drivers identified by the Review was ‘rostering’, i.e., ‘decisions on the
numbers, skill level and skill mix of staff required to be on duty at any given time’ (p.116). An
important component of rostering affecting costs is that of rostering staff to work outside core
working hours (overnight and at weekends), which attract bonus payments. The Review noted
that there are no national guidelines on rostering and that this issue is to be examined as part
of the Croke Park Agreement, a public service agreement from 2010 to 2014. The review
recommended that all agencies review their rosters within a six month period of the publication
of the review.
4.70 Recommendations were also made regarding the allocation of funding to service providers in
line with those proposed by the National Disability Authority and the Expert Reference Group.
The Review noted a lack of transparency in the rationale for current allocations, and proposed
that a standardised resource allocation system be introduced.
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4.71 Mindful that implementing a nationally based resource allocation system of funding will require
time to develop and trial, an interim resource allocation model was proposed. This interim
model recommended that current flat rates (e.g. €70,000 for a residential place) be replaced by
costs outlined in the Value for Money Review until such time as a systematic resource
allocation system is implemented nationwide. During this time the HSE are charged with
working within individual service providers to assist them in reducing costs to those average
costs set out in Table 4 below.
Table 4: Summary analysis of data on national resource usage groups compared with recommended
target pay costs per place
Average pay cost
2009: minimum
support to
high/intensive
Recommended
pay cost:
minimum support
to high/intensive
Day service for children with Intellectual Disability
€6,245-€29,399
€6,000-€28,000
Day service for adults with Intellectual Disability (activation,
day support)
€5,465-€39,143
€5,000-€38,000
Day service for adults with Intellectual Disability (work like)
€10,621-€18,908
€10,000-€18,000
5 day residential services for people with Intellectual Disability
€20,000-€42,000
€20,822-€43,537
Table 3: National Resource Usage Groups
7 day residential services for people with Intellectual Disability
€21,000-€88,000
€21,489-€92,077
4.72 The Review noted that the available evidence suggests that supporting individuals in smaller
settings is more cost effective than in larger institutional settings, noting that cost effectiveness
should not, however, be assumed to translate to ‘cheaper’. There is evidence that institutional
care may be cheaper, however, this is likely to reflect the poorer staffing ratios in these
facilities. When staffing ratios are increased to acceptable levels, as they will be required to do,
costs will rise proportionally. The Review concludes that the existing research suggests that it is
the nature of the service provided, as measured by the supportive nature of staff and the
presence of institutionalised characteristics, which define quality.
4.73 In its examination of outcomes in the disability sector, the Review noted the absence of agreed
outcomes expected in the sector, and of an agreed set of national indicators. Although
disability services aim to enhance the quality of life of those who avail of them, the Expert
Reference Group caution that services may, in fact, have isolated people from their local
communities. An agreed set of outcome measures are required based on outcomes
determined for each individual. Individual outcomes should then feed into a process of
continuous assessment of specific types of services, with those that are demonstrated not to be
effective, discontinued.
4.74 To determine whether outcomes are being achieved within the Disability Services Programme,
the Review assessed progress on four main objectives of Towards 2016, the social partnership
agreement which underpins implementation of the National Disability Strategy (see Section
4.7).
26 | P a g e

With regard to ‘leading full and independent lives’ the Review examined indicators of
independence including access to person-centred planning (PCP), health status, day
care provision and residential supports. Findings revealed that some individuals fail to
achieve positive outcomes in these areas; some have no access to PCP, no access to
accessible materials regarding health care supports, no access to inclusive day activities
and no access to independent living options. Efforts to support ‘full and independent
lives’ may be deemed unsuccessful.

In examining the objective ‘to participate in work and society, and to maximize their
potential’, the Review examined educational and employment outcomes for people with
disabilities. Educational outcomes, which are under the auspices of the Department of
Education, identified most children with disabilities receiving education in specialist
settings. This contrasts with Government policy which encourages mainstreaming of
education for children with disabilities. Early drop-out rates for those with disabilities
were over double those for children who do not have disabilities. Employment outcomes
were generally diminished when compared with the general population. Those in
specialist disability services had poor access to employment opportunities. Employment
rates for those with disabilities in Ireland (32%) were considerably lower than the
European average (43%) and the lowest employment rates in the OECD. Observing
these outcomes, commitments by Towards 2016 appear to be unmet.

‘Access to services, as well as wider environmental accessibility’ was deemed to be
beyond the remit of the Review. The Department of the Environment, Community and
Local Government was identified as the appropriate authority in this area. In addition,
the work of the Centre for Universal Design, National Disability Authority was identified
as providing best practice guidelines and policy advice on accessibility in Ireland.

The final objective was to provide ‘support to carers in their caring role’. Supports
provided via the Health Vote include advocacy, advice and support, respite and home
support. A consultation undertaken by the Review revealed that just under half of those
consulted believed this objective was partially met, and only one in ten believed it was
fully met. Once again, the aspirations of Towards 2016 did not transfer to improved
supports for people with disabilities.
4.75 Despite these deficits in implementation, the reforms proposed in the Review were a cause of
concern for some government Departments given that no costing data were provided by the
ERG, nor was evidence provided that experiences in other jurisdictions of cost efficiencies
could translate to the Irish context. The Review acknowledged that ‘an extensive amount of
detailed analysis will be required to develop a migration plan from the current way of delivering
disability services to the point where service provision, administrative structures and
governance procedures all support the achievement of the proposed vision and goals’ (p.176).
4.76 In concluding this brief synopsis of the Value for Money and Policy Review of Disability
Services, it is important to bear in mind that the proposed model of reform of the Disability
Services Programme occurs within the context of an economic recession. Resource
constraints are likely for the foreseeable future, and demographic information reveals that the
numbers of people seeking support will increase.
4.77 Notwithstanding these financial constraints, findings from this extensive Review leave little
doubt that current disability support services are not meeting the objectives set out in Towards
2016, nor are they meeting the expectations of people with disabilities, and, according to the
financial analysis conducted through the review, they are financially unsustainable. While the
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financial viability of the proposed reconfiguration of disability services has yet to be determined,
there is now general consensus regarding the proposed direction of policy.
5. From Policy to Practice
5.1
The preceding section highlighted some of the major policy developments regarding disability
services in Ireland from 1990. Four reports published in 2011- 2012 herald some of the most
significant changes ever for the delivery of disability support services in Ireland:

The National Housing Strategy (2011) aims to mainstream the provision of housing for
people with disabilities. A five year implementation plan is scheduled with a direct
reporting line to the Cabinet Committee on Social Policy.

The Congregated Settings Report (2011) calls for the relocation of over 4,000 individuals
with disabilities from congregated to dispersed housing in the community. A seven year
implementation plan will report under the auspices of the National Disability Strategy.

New Directions (2012) aims to introduce a new framework for the delivery of day
services supporting people to ‘do ordinary things in ordinary places’. A National Change
Management Plan led by HSE will provide support to provider organisations to develop
three year implementation plans.

Finally, the Value for Money Review (2012), allied with the policy recommendations from
its Expert Reference Group, not only provides further endorsement for the policies
outlined above, but recommends a major reconfiguration of the Disability Services
Programme. A new National Disability Strategy Implementation Group was established
to monitor progress on this reconfiguration, personally chaired by the Minister for State
74
with responsibility for Disability, Equality, Mental Health and Older People .
5.2
In February 2013, the National Implementation Framework of the Value for Money Review was
published. The framework is defined as an evolving document and phase one of the
implementation planning process. This phase included the proposed establishment of
implementation structures by Q1 2013, the initiation and evaluation of demonstration projects
by Q4 2013, and the undertaking of a policy appraisal of the Value for Money Review by Q1,
2014. Following these activities, phase two commences with the development of a detailed
implementation plan for the commencement of migration to the new model of service.
5.3
The implementation process is led by a National Steering Group chaired by the Department of
Health with representation from HSE, the National Disability Unit and the National Consultative
Forum. The Framework notes that ‘where possible, existing working groups, for example
groups implementing the New Directions Report and the Congregated Settings Report, would
be assimilated into the VFM project governance structure’ (p.9). A dedicated project team
established by HSE is identified as key personnel implementing this reform. A Director of
Disability Services is proposed who would have sufficient authority to ensure recommendations
were enacted. This position falls within the remit of the newly configured Social Care
Directorate of the HSE.
74
House of the Oireachtas: Funding of Disability Services Motion 04 December 2012 available at
http://oireachtasdebates.oireachtas.ie/Debates%20Authoring/DebatesWebPack.nsf/takes/dail2012120400047
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5.4
Seven core strategic aims are identified, presented in Table 5. Each has actionable outcomes,
with named responsible agencies and defined timelines.
Table 5: Strategic aims of Value for Money Implementation Framework
Strategic Aim
Lead Role
Timeline
1. Establishment of administrative and governance framework
HSE
2013-2014
2. Achievement of optimal efficiency
HSE
2013-2014
3. Implementation of commissioning and procurement framework
DOH/HSE
2013-2014
4. Development of resource allocation model
DOH/HSE/NDA
2013-2015
5. Establishment of information infrastructure
DOH/HSE
2013-2014
6. Development of strategic and operational plans
DOH/HSE
2013
7. Migration towards a person-centred support model
HSE
2013-2015
5.5
Deliverables to 2013 include the appointment of a Director of Disability Services aimed at
creating a national disability function within the new HSE Social Care Directorate, the
development of an information strategy, and the development of a resource allocation system.
5.6
Deliverables to 2014 include the development of monitoring systems to track the roll-out
demonstration projects of individualised living arrangements, the development of guidance on
staff mix required to deliver services, and the implementation of a common assessment tool for
use in resource allocation.
5.7
The recent operational plan for the new HSE Social Care Directorate provides further detail on
75
the short-term advances in implementation scheduled to occur in 2014 . The proposed
Director of Disability Services position is identified as a ‘Head of Operations and Service
Improvement, Disability Services’, one of five key posts reporting directly to the National
Director of Social Care. Referring specifically to implementing the Value for Money Review, the
plan calls for service provider organisations to work in conjunction with Social Care Directorate
personnel to plan their migration to a more individualised model of support between 2015-2019.
More specifically, the plan identifies150 individuals with disabilities who will move from
congregated to individualised living arrangements in 2014. Plans for implementing New
Directions and Progressing Children’s Disability Services in 2014 are similarly outlined.
5.8
The Social Care Operations Plan also highlights the role of ‘demonstration’ projects in
managing the transition to a new model of support. These are typically small scale and
75
Health Service Executive (2014) Social Care Division: Operational Plan 2014. Health Service Executive, Dublin.
29 | P a g e
innovative projects, and have been used internationally to disseminate good practice when
reforming disability services. A leading organisation in Ireland promoting such demonstration
projects is GENIO, a non-profit organisation funded by the State and philanthropic donations. It
provides financial support to organisations and individuals wishing to promote more
personalised, community-based supports. An evaluation of a number of demonstration projects
funded by GENIO was completed in early 2014 evidencing the positive impact of individualised
76
living arrangements .
5.9
At the time of publication of this report for the Moving Ahead project, the National
Implementation Framework is currently in the process of populating a number of key working
groups and sub-groups to support the implementation of reform in the sector. Six working
77
groups are now established :
1. Person Centred Models of Services and Supports – Strategic Planning (with two subgroups focusing on (1) base-line data and (2) evaluation)
2. Person Centred Models of Services and Supports – Implementation, Oversight and
Support (with three sub-groups focusing on the implementation of the HSE’s (1)
Time to Move on From Congregated Settings, (2) New Directions and (3) Progressing
Disability Services for Children and Young People).
3. People with Disabilities and Community Involvement.
4. Quality and Standards.
5. Management and Information Systems.
6. Governance, Efficiency and Effectiveness (with five sub-groups focusing on (1)
governance and service arrangements (2) implementation of Value for Money tasks
(3) Shared Service Platform (4) Procurement (5) Haddington Road).
5.10 A Project Manager and Project Lead are now appointed to oversee the implementation of this
programme of work. These personnel will report directly to the National Steering Group.
5.11 The Next Steps project led by the National Federation of Voluntary Bodies similarly provides
supports to provider organisations in the intellectual disability field who are implementing novel
and innovative approaches to individualised supports. Twenty-one organisations share their
learning from trialing new, more personalised supports. As with GENIO, evaluation data are
being gathered to determine the benefits of these approaches and the experiences of
participants in transferring to new models of support. The expectation is that these
demonstration projects will also provide tangible evidence of how change can be successfully
implemented.
5.12 To conclude, unprecedented change is anticipated in the disability sector in Ireland. Where
policies are implemented, services developed in the next decade will be fundamentally
different. Differences should be apparent in several areas: the greater visibility of people with
disabilities; their greater access to mainstream provision; and the development of new service
arrays such as brokerage and advocacy services, indicating a different and emerging role for
76
McConkey, R., Bunting, B., Ferry, F., Garcia-Iriarte, E., & Stevens, R., (2013). An evaluation of personalised supports to
individuals with disabilities and mental health difficulties. University of Ulster.
77
National Federation of Voluntary Bodies Spring Newsletter 2014 available at
http://www.fedvol.ie/_fileupload/Newsletters/Final%20-%20Newsletter%20Spring%20April%202014.pdf
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provider organisations. The drivers for these changes include national expectations and
policies. They also include the awareness that services need to improve if they are to comply
with international obligations, such as the United Nation’s Convention on the Rights of People
78
with Disabilities , which Ireland has signed but has yet to ratify.
6. The Challenge of Implementation
6.1
Services in Ireland are therefore currently in transition to a more personalised model of
supports for people with intellectual disabilities. The process to date, however, has been
characterised as a ‘slow and tentative drift’, with agencies at many different stages of this
79
journey. In the absence of formal monitoring processes for implementing this transition, it is
reasonable to raise concerns about how effective the process will be in meeting national and
international obligations and expectations.
6.2
Reports and reviews of disability services in Ireland paint a consistent picture of poor or nonexistent implementation by voluntary and statutory bodies of changes required by successive
reports over several decades. This pattern in three broad areas – funding transparency,
service level agreements, and performance (outcome) indicators – is summarised here. This
80
pattern highlights the necessity of monitoring implementation if the ‘fundamental’ changes
required in disability services are to be achieved.
6.3
In relation to funding transparency, the Comptroller and Auditor General in 2003-2004
reviewed 42 nonprofit organisations in three former health board regions reporting that of
these, 12 organisations (which together had received approximately €100m in funding) had
submitted no financial statements in 2003. One large organisation had submitted no financial
statements for four years to 2004, despite having received €288 million in state funding. The
HSE had performed reconciliations between reported income and HSE funding for only six of
the 42 organisations. In addition, the Comptroller and Auditor General’s financial audits of the
former health boards revealed very extensive deficiencies in service and financial
81
accountability and administration of disability services.
6.4
At that time the Comptroller & Auditor General reported that the nonprofit sector itself
recognised the need for better accountability, transparency and governance and viewed
correction of this weakness as a matter of priority. However, the 2011 Value for Money
Review, as noted in Section 4 above, once again pointed to the absence of a financial data
collection and monitoring system in disability services, remarking that it was a significant
barrier to the Review’s own work. Noting the lack of itemised funding information in disability
78
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. p. 173
79
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. p. 75
80
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. p. 173
81
These were: the absence of service agreements and provider plans; late receipt and non-receipt of audited accounts;
acceptance of unaudited accounts; failure to reconcile grant payments with audited accounts; overpayment of grant
amounts; failure to maintain grant registers and grant files; and no register of recipients of aids and appliances maintained.
Absence of the following: completed application forms; grant approvals; tax clearance certificates or Revenue
Commissioners’ confirmation of charitable status; registers recording the receipt of audited accounts; certificates
confirming satisfactory service by grantee; written procedures; review of monitoring procedures; formal evaluation of
services; receipts of grant payment amounts; and of review of compliance by nonprofit organisations with conditions
attaching to funding. C&AG, 2005, Appendix B
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organisations and lack of reconciliation to organisational annual accounts, the Review argued
that such analyses should be mandatory for the allocation process from 2013. However, in
the absence of a formal monitoring mechanism for the Review’s recommendations, it is not
possible to establish whether this has taken place. Furthermore, the Value for Money review
also noted multiple ongoing deficiencies in the state’s own capacity to account for its
expenditure. The HSE’s accounting system does not capture all HSE‐funded expenditure on
the Disability Services Programme. Different regions have multiple financial systems, and
breakdowns on pay or non‐pay costs, or on programme-specific costs (e.g. residential, day
82
services, etc.) are not possible with the existing system .
6.5
Service Level Agreements (SLAs) are critical to guiding the relationship between the state as
commissioner of services and the bodies providing them. Despite the fact that in the 1990s,
the Department of Health had planned to introduce SLAs and to link funding to them, in 2005
the Comptroller and Auditor General reported that in 2003-2004, over a third of funding was
not covered by SLAs, and that where they did exist, they were high-level frameworks, lacking
in specifics, and often not signed until long after funding and service provision had begun.
After this, in 2009, the HSE introduced a new governance framework to formally specify
disability services, outcomes and performance indicators. Despite this, in 2012 the Value for
Money review still found many SLA omissions in disability services, including in systems and
protocols; formal documentation of the commissioning process; SLA datasets; regional and
national level data aggregation; annual collation and publication of summary SLA data; and in
independent validation and auditing of the SLA process. As a result, The Value for Money
Review noted, effective performance monitoring in disability services was not possible.
6.6
A core element of SLAs is performance (outcome) indicators and, again, the failure to develop
these for disability service provision in Ireland has also been noted repeatedly over several
decades. The Comptroller and Auditor General in 2005 noted a commitment in Enhancing the
Partnership, a partnership agreement dated 1996, by nonprofit organisations to develop
internal audit and service evaluation functions. These commitments were unmet by 2005
leading the Comptroller and Auditor General to conclude that structures for monitoring,
measuring and assessing performance were poorly-developed, albeit acknowledging that the
HSE had commenced a process to compile data which will form the basis of performance
83
indicators relating to the governance and management of disability services . In 2009
however the Comptroller and Auditor General again identified many deficiencies in
performance indicators and in 2012 the Value for Money Review found that the position has
not changed materially as there had been little progress … in developing national outcome
84
indicators .
6.7
In the absence of transparency regarding funding, of SLAs and of clear performance goals for
disability services, the consistent absence of service monitoring or review is of particular
concern. The Comptroller and Auditor General noted in 2005 that there were no formalised
procedures for HSE service reviews, and that none of the former health boards reviewed in
that report had evaluated all disability services in their catchment area. In 2012, the Value for
Money Review reported that the HSE had no information about SLA review meetings held to
date – their outcomes, their number, or even whether any had been held at all. This echoes
findings of previous studies of the Eastern and Midlands Health Boards which found that staff
82
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. P.47
83
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision
of Disability Services by Non-Profit Organisations. Dublin; Government of Ireland.
84
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. P132
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85
had confused expectations and difficulties regarding standards and monitoring .
6.8
For many decades, Department of Health strategy and policy documents have repeatedly
acknowledged the unique and unparalleled role of non-profit organisations in providing health
and personal social services and confirmed the state’s commitment to developing its
86 87 88
relationship with these organisations , , . Given the consistent absence of government
oversight of voluntary service providers in Ireland, it has been noted that accountability and
representation in voluntary organisations is patchy; some are responsible to their boards,
some only to their religious superiors and family and friends groups who may neglect to
maintain representative structures. Commentators have noted that some services are driven
89
by organisational missions rather than by the needs of the individuals they serve . In these
cases service delivery may be driven by the power of individual personalities who decide
90
policy and direction with little reference to others and resist the need for change . Voluntary
agencies, it has been noted, may be reluctant or refuse to co-operate with needs for change;
they may also refuse to share information, transfer funding or facilitate moving supported
91
people to another area .
6.9
It is important to note that legacies of previous service patterns, and concerns about
relationships between the state as commissioner and voluntary agencies as service
92 93
providers, are not specific to Ireland , . International trends suggest that when services are
provided by voluntary organisations, equity and universal entitlement, features that should be
inherent in a public service, may be problematic; and that interdependence between the state
and the voluntary sector has led to pervasive blurring of boundaries and problems with
94
accountability of individual voluntary agencies .
6.10
As noted by successive reports, therefore, the effective operation of services for people with
intellectual disabilities is dependent on clear specification of relationships between statutory
95
and nonprofit organisations and expectations for service provision . The detailed and specific
recommendations of the Value for Money Review have the potential to address this situation,
but only in the context of fundamental change to a system that has been characterised as
85
Donoghue, F., (2002). Reflecting the Relationships; An Exploration of Relationships between the former Eastern Health
Board and Voluntary Organisations in the Eastern Region. ERHA.
86
Department of Health (1994). Shaping a Healthier Future. , Dublin: Department of Health
87
Department of Health (1996): Enhancing the Partnership. Report of the Working Group on the Implementation of the
Health Strategy in Relation to Persons with a Mental Handicap, Dublin: Department of Health
88
Department of Health and Children (2001). Quality and Fairness – A Health System for You. Dublin: Department of
Health and Children.
89
Power, A., & Kenny, K., (2011). When care is left to roam: Carers experiences’ of grassroots non-profit services in
Ireland. Health & Place, 17, 422-429.
90
Ryan, A., 1999. Walls of Silence: Ireland’s Policy Towards People with a Mental Disability. Red Lion Press, Kilkenny.
P.120
91
Power, A., & Kenny, K., (2011). When care is left to roam: Carers experiences’ of grassroots non-profit services in
Ireland. Health & Place, 17, 422-429.
92
Donoghue, F., (2002). Reflecting the Relationships; An Exploration of Relationships between the former Eastern Health
Board and Voluntary Organisations in the Eastern Region. ERHA.
93
Power, A., & Kenny, K., (2011). When care is left to roam: Carers experiences’ of grassroots non-profit services in
Ireland. Health & Place, 17, 422-429.
94
Kramer, R., (1994): ‘Voluntary Agencies and the Contract Culture: “Dream or Nightmare?”’, Social Service Review,
March
95
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision
of Disability Services by Non-Profit Organisations. Dublin; Government of Ireland.
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96
currently not financially sustainable; nor accountable; nor effective .
6.11
The complexity of the disability services system, and the degree of change required mean
that change is unlikely to be rapid. According to the Comptroller & Auditor General, effective
change management is required, which views the system as an ‘integrated learning process’
engaging in ongoing policy development, resourcing, capacity development, implementation
of services, monitoring and evaluation. , and including addressing ’the capacity of non‐profit
organisations to meet … requirements relating to the implementation of the standardisation of
services, good governance and greater accountability.’ , which may require investment in the
upskilling of volunteer board members.… The change will require addressing governance,
quality assurance, information management, management structures; and operational
97
processes , but the degree to which the various stakeholders in the disability services
delivery system have the required competencies and supportive infrastructure to implement
98
this at the present time is unclear
6.12
To conclude, there is considerable evidence illustrating how successive attempts to introduce
greater transparency and accountability within the disability sector have fallen by the wayside.
Repeatedly, the Comptroller and Auditor General has highlighted failures in implementing
recommendations of successive reports. More recently, the Value for Money and Policy
Review has concluded that there is little if any progress on issues of funding transparency,
contractual agreements and outcome indicators, issues which have been successively
highlighted for improvement. Within this context, achieving the large-scale configuration of
the disability service sector as set out in the Review will require considerable adjustments to
current practices within and between HSE and nonprofit organisations. In the absence of any
formal monitoring process for implementing a reconfiguration of services, it is possible that
little more is achieved than the ‘slow and tentative drift’ identified by the Value for Money and
Policy Review.
96
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health. P173
97
Department of Health (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Department
of Health.
98
Comptroller and Auditor General Report on Value for Money Examination (2005). Health Service Executive: Provision
of Disability Services by Non-Profit Organisations. Dublin; Government of Ireland.
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